If you would have told me six years ago that Sarah would be the vibrant, intelligent, funny little girl that she is today, I would have cried and told you I hoped you would be right. She is all that and more.
We are still dealing with some leftover preemie issues - ear infections, tubes, and posture. She had tubes put in last February and her adenoids out after four years of recurrent ear and sinus infections and the beginning stages of hearing loss. To date, her hearing is greatly improved, and there have been no infections since the placement of the tubes and removal of adenoids. I was nervous, but the ENT was optimistic ( we still use Yale as a primary source for specialists) and he was right. Recently she had her six year check up and we are still monitoring healthy growth and improving posture. Apparently preemies still have postural issues ( sway back) as they grow due to the poor core strength at birth and throughout early development. She had Birth to Three services, ocupational therapy, and physical therapy. We have her in swimming and gymnastics now and these are nice activities to build strength while she has fun and learns with her peers.
Thursday, March 21, 2013
Sunday, February 28, 2010
February 2010
Sarah turned three this month and continues to amaze us. She's getting ready for pre-school now; counting to 20, knows her alphabet, and converses in a creative and thoughtful manner. Matthew is 17 months now, and is in the difficult stage of knowing what he wants, but unable to clearly communicate his desires with the limited vocabulary and sign that he has. Temper tantrums abound. We find ourselves reminiscing about Sarah at this stage and that at 17 months with her, we were imminently expecting Matthew. Whew! They get along very well, and have a loving relationship. Adam and I enjoy the closeness they share and at how normal our life has become. The kids are enjoying the winter and the sledding and snowman building that we've been able to do this winter.
Wednesday, July 22, 2009
Summer finds us well and enjoying the season. Matt is growing like a little weed and Sarah has fully become two and a half. Matt is crawling and exploring everything and Sarah is talking in sentences, singing songs and loving life. We were visitors to the TODAY show on July 22 for Farmer's Insurance "Be a Hero for Babies" day - a one day fundraising effort for the March of Dimes - and met a few of the hosts and even made a pan shot of the audience! Sarah loved it and thinks she's on TV every day now. Matt was his usual flirtatious self and made friends with everyone including Merideth Viera!
Monday, April 20, 2009
Spring Update
Normalcy. Wow. This has been a long time coming. I returned to work today after a week of April vacation at home with Sarah and Matthew. During the week, we went to the park with friends a number of times, ate at McDonald's, and Adam and I took Sarah to see Sesame Street Live this weekend. Sarah loved it all! She is learning how to hang out with other little kids, loves playground equipment, and now everytime she sees the Golden Arches, says "fren fries" over and over until we agree with her. Matthew cut his first tooth this weekend and is sitting up. Sarah is talking in 4-5 word sentences and sings nursery songs to us at will. This is amazing!
Monday, February 9, 2009
Happy Birthday Sarah!
Sarah turns two today! We celebrated on Saturday with a family party. We had pizza and cupcakes - Sarah's favorites. We joked that Matthew, Sarah's little brother, was actually able to enjoy the party this year; we didn't even know I was pregnant with him last year when we celebrated Sarah's birthday! This was the last year of just family for a winter birthday party. Restrictions are still in place for Sarah during cold and flu season. We go into "lock down" mode when the season hits due to her residual lung disease. We were not spending another birthday in the hospital this year. Last year we finished her party with a trip to Yale's emergency room as she had gotten a cold and her oxygen saturation was dropping. This year, she was healthy and really enjoyed her party. We marvel at how far Sarah has come in the last year. Last year at this time, she was just barely sitting up on her own and rolling over with prompting. This year, she's running, climbing, talking, pretending - doing all the things a two year old should do. Today is a little hard for us as we miss our little man, Johnathan. I do no think a year will go by on their birthday when we will not relive the events of two winters ago. Thank God that Sarah is healthy and making great strides. As always, she is our little miracle and reminder of the blessings in life.
Friday, February 6, 2009
Journals from the NICU
Week 1:
Much like last week, this week has been quite the roller coaster. We had been told to expect this pattern for a while. I was discharged from the hospital February 12th and was still sore and tired, but was healing. Adam was stressed out and tired, but seemed to be strong.
Sarah continued to improve aside from a few instances when her heart rate and oxygen levels would drop. The doctors thought that this is happening due to possible infection. She had been given the full infection workup twice this week and new antibiotics were added to her regimen. She had her Umbilical Artery and Vein Catheter removed and a Peripheral Venous Catheter put in. She has also had a few poopie diapers in the last week which Mom and Dad were more than happy to help change. She was being fed now from Mom's supply, and has gained an ounce. Johnathan had a more difficult week than Sarah. After a good start being weaned off the ventilators and recovering from the Pulmonary Interstitial Emphysema, as well as having an Intercranial Bleed stabilizing, he was rushed to emergency surgery on Thursday around noon when he showed a perforation of the bowel. 31 centimeters (roughly 1/3 of his small intestine) was removed due to Necrotizing Enterocolitis. He had two stoma on his stomach where the large intestine and the small intestine ends could be monitored to make sure the intestine stayed pink and healthy and to make sure no more of it dies off. He is doing what the doctors expect him to be doing at this point. He was back on the oscillating ventilator for a few days following the surgery, but was removed from it and placed back on the regular ventilator this morning.
Week 2:
This week has been another roller coaster of a week. We are told to be ready for this pattern, but somehow the dips and raises in the coaster track are never expected. Sarah continued to chug along. She was up to 1 lb, 13 oz, and is on a regular feeding schedule. She tolerated the feedings well and this week was able to be held by both Mommy and Daddy. She seemed to enjoy the experience, although not as much as we did. Sarah is experiencing periods of apnea; the NICU team seems to think she is just tiring from being off the intubation and only on the CPAP (nose prongs) for oxygen. If necessary, she would be re-intubated to help her not wear herself out. Johnathan was proving to have more challenges. Being a boy, he never showed his feelings, but changed color and that was his saving grace so far - that and a very excellent primary nurse. The week started off fine for him. He was steadily improving from his surgery the previous week and was able to have a colostomy bag as he began stooling early in the week. Mommy held Johnathan on Monday, and by Tuesday the skin layer of his surgery site had opened up, leading to not being able to be held. There is no apparent infection at the wound opening, and the doctors are packing the open wound with calcium alginate. On Thursday, his color was pale and motley, so the nurse, Ana, called for a full workup. The workup showed an elevated white blood count, but the lumbar puncture was not able to be done. Friday, the attending physician was able to draw the lumbar puncture and the initial culture showed a yeast meningitis.
We will not find out the results of the full culture for a few days as the yeast needs to grow out. John was started on amphotericin immediately, and had a stable night last night. He has had a few more transfusions this week as he was slightly anemic, so his color now is pretty good. He has maintained his birth weight of 1lb, 15 oz. Daddy was able to hold Johnathan last night as the primary nurse thought it would be good for Johnathan and Daddy to have the experience. He seems to do well with holding and seems to like it as well. His cranial ultrasound was repeated Thursday, and the intraventricular bleed is holding steady at Level Two, which means relatively low long term effects. He is a tough little one and we are praying that he continues to be a fighter.
We'll keep you updated as anything new happens.Thank you for your continued prayers.
-Kristen,
Adam, Sarah and Johnathan
Week 3 update
Hi Everyone,
Once again, thank you for your continued prayers and support. You have all been amazing. We have neither wanted for food nor prayers over the last week. Thank you!
Johnathan and Sarah (knock wood) decided to give us a bit of a break this week. They are both up to 2 pounds! As you read, you will see that the theme of the week is "poop" and all things bathroom related.
After Johnathan's meningitis scare last week, the cultures never grew and there is now some question as to whether there was a meningitis or not at all. In order to ensure the fact that the meningitis does not develop, Johnathan is on a continued course of amphotericin (an antifungal) to prevent the growth of the yeast. There was some yeast present when he had the abdominal surgery two weeks ago, so they are practicing safe medicine. He has has a quiet week, other than some desaturations in his oxygen level. He continues to be on intubated and on a ventilator. This week he began stooling (who knew we'd be this excited about poop!) which means that his digestive track is beginning to function normally after the gastric surgery. Since this is the case, they have begun what they term "non-nutrative feedings" giving Johnathan 1 cc of breastmilk every four hours (or so) to get his GI track functioning normally. It takes more calories for him to process the milk than there are in the feedings thus far, so he is still on TPN (basically a high nutrient IV) to give him the nutrients and engery he needs to grow. To add a little humor, Johnathan had a bit of a rude awakening Friday night. There was some concern by the medical team that Johnathan's testes had not yet descended, so they called in Endocrinology as a consult. John was sleeping peacefully (he does this well) when the endocrinologist put his hands in the isolette, took off John's blanket and diaper and began to measure John's male parts with a rather cold ruler. Needless to say, there was much crying on John's part and a rather futile attempt at not laughing on Mom and Dad's parts. The endocrinologist thought things there looked normal, but sent blood off anyway to ensure proper hormone levels for a male preemie.
Sarah has had an equally quiet week. She is up to 12cc's breastmilk for feedings every two hours. She has been taken off of IV feedings entirely and is receiving all of her nutrition via the OG (oral-gastric) tube that leads from her mouth to her stomach. Sarah was re-intubated last Sunday night after a pattern of rather low desaturations. It is thought that she simply tired out breathing at such a young age and was taking breaks from the whole breathing experience. We are told that this is normal for preemies of their gestational age and that she will eventually mature enough to remember to breathe on her own. Sarah has her own poop story to share this week: Friday night she had not had a BM when we left around eight, when I called at 6 am to check in, the nurse on duty told me that she had had a quiet night but that "Your daughter" (yeah, OURS!) had been a bit naughty. Evidently, when the nurse checked her diaper, there was only urine. Taking a rather cavalier attitude toward diaper changing, she had no diaper under Sarah (Mistake number one) and was holding up Sarah's little bottom when, oops! Mount Vesuvius erupted! Yes, a huge BM all over her blanket and up to the nurse's elbow! The nurse told me she thought that Sarah probably weighed slightly less that morning after her evening "experience". We were just hysterical that our little daugher was fresh enough to thank the nurse in such a demonstrative manner.
Thank you for sharing in our little roller coaster. We continue to think of you all and thank you for your prayers, numerous prayer groups, and support.
Love,
Kristen, Adam, Sarah and Johnathan
Week 4
Hi Everyone,
The saga continues...
As I wade through a large list of presents for which I need to write thank you notes, and which also need to be put away to wait for the twins to come home, I am struck by the absolute adventure that our kids are putting us through. Johnathan seems not able to give Mom and Dad a break. I have suspended his driving privileges until I see fit to reinstate them. At the rate he is going, he will be grounded from the day he reaches teen-hood until his retirement date.
Week four brought more "learning to breathe" exercises for Sarah. She continues to be on the ventilator with fluctuating support. She is showing a regular pattern of desaturations in her oxygen level every two hours...right about the time that she is ready to be fed, changed, medicated, and massaged. She gained a little more weight this week and is averaging at two
pounds, three ounces. It seems that the full feeds are suiting her. She seems aware of the regular feeding times and knows when she wants attention, setting off monitors helter-skelter and giving her nurses a run for it. The medical staff is trying to wean her on the ventilator over the next few days in an attempt to bring her to extubatable settings. They seem to think that with regular feedings and more muscle mass on her, she will simply take herself off the need for the ventilator. This would be good; the long term effects of the ventilator can lead to lung disease which she would eventually outgrow, but which would be detrimental to her overall health for the first few years.
Johnathan is, well...Johnathan. After the peace of the last week, he gave Mom and Dad their weekly crisis. Wednesday, the nurse thought she heard a heart murmur. This murmur was then heard by the attending
physician and then consequently by the cardiothoracic surgeons who determined that Johnathan had a Patent Ductus Arteriosum. This is basically when the duct that bypasses the lungs while the infant is still in utero opens or fails to shut after birth, leading to a lack of oxygenated blood in the system and a harder load for the heart to carry. It seems that Johnathan had opened this ductus. Due to the surgery that he endured a few weeks back, he is not a candidate for the medicine that could be given to close the ductus, therefore, on Thursday we sat with the nurses, the attending physicians, then talked on the phone with the cardiothoracic surgeons to discuss Johnathan's surgical plan. The plan was to do surgery on Friday, the ninth. Friday morning, Dad worked, came home, picked up Mom and off we headed to Yale to visit with Johnathan before his surgery and to sign any consent forms for the surgery. When we arrived at Yale, Johnathan's
primary nurse informed us that there would be no surgery as he had closed the duct overnight on his own. We were cautiously optimistic. After his "almost" meningitis (the cultures never grew), we were convinced that Johnathan decided that the gig was up and after a fourteen day course of some rather powerful antifungals, he really did not want to go through surgery. Today, when we called the hospital for the early morning update, we were informed that the murmur had come back overnight and then disappeared again by morning. We are hoping that the duct remains closed. They are still holding his feeds until he can process them.
The dog and cat are acclimating to Mom and Dad's comings and goings, and seem to enjoy the strangely scented laundry that we are bringing home from Yale every few days. Baby blankets and micro-preemie sized clothes seem to be an interesting addition to the house, but Dog and Cat are wondering
when we can be a pack again and where these strange smells are coming from.
Love,
Kristen, Adam, Sarah and Johnathan
Week 5
Hello Everyone,> Week five in the NICU continued on the regular> path. > > Johnathan is still battling closing the PDA (open> duct near his heart) and either has a murmur or> doesn't, depending on the time of day. He is now up> to 3 pounds, 2 ounces and is being fed! He's > making regular increases on the feeds and gets them> every two hours. He seems to like them and sleeps,> well, like a baby, after he's fed. The incision> site from the NEC (intestinal surgery) from three> weeks ago is closing nicely and really looks> healthy. He is proving to be laid back and relaxed> about most everything and seems to take everything> but face-washing in stride. That he does not like> at all.> > Sarah is making regular strides in her own> feedings, but is proving to be rather a primadonna> about life in general. She will definitely let> everyone know when her diaper is wet or when feeding> time is ten minutes away by setting off her monitors> and having little tantrums. Sarah is weighing in at> a petite 2 pounds, 8 ounces. This Tuesday she gave> us a scare (and her primary nurse, Catherine) when> she cried non-stop from 8 in the morning until 2 in> the afternoon. After a battery of tests, and> finally a bath to wash off all the goop from the> tests, she calmed down and became the little doll we> know her to be. It appears at this point that she> either was just having a bad day, or Mom ate> something that did not agree with Sarah. > > Both Sarah and Johnathan continue to be on> ventilators and will begin treatment tonight for> chronic inflamation of the lungs. The hope is that> they will be able to be weaned off the ventilators> over the next week or so.> > Thanks for the continued prayers for our little> ones.> Love,> Kristen, Adam, Sarah, and Johnathan
Week 6
Hi Everyone,
The weeks continue to pass by us. Kristen went back to work this week on Wednesday. She is splitting her maternity leave in half, this prior part to heal from the delivery and the second half she will take when the twins come home. It was a tough day for her on Wednesday - very emotional - but she made it through the week and is stronger for it. Adam is continuing to work and finish projects around the house. Some of you might have heard that we had a bit of a flood in the basement during the March 2nd storm due to a frozen and backed up French Drain system and a sump pump failure, so the sump pump had to be replaced with a working model. Adam finished that project this week while Kristen was working. We finally bought a crib this weekend and a changing table/dresser for the babies. We had planned on purchasing one earlier, but with the adventure we have been on with the babies these past seven weeks, it just didn't happen. The babies primary nurses have been bugging us about getting the house ready for the babies, so we decided that since things are looking more stable, it was time.
The babies have made some significant gains this week. Johnathan is now up to 3 pounds, 1 ounce. He is still being fed through the OG tube, but is tolerating it well and seems to enjoy having a full belly. Sarah is up to 2 pounds, 9 ounces and is on full feeds. They are both having wakeful periods in which they are alert, looking around and interacting with their environments. They do well when Mom and Dad hold them and can tolerate being held for up to three hours. Last Sunday, the twins were started on a course of steroids to aid them in coming off the ventilators. On Tuesday, Sarah was taken off the ventilator and put on CPAP (air through a nasal tube). She is loving being off the ventilator and is doing a great job breathing on her own. Johnathan was taken off the ventilator on Wednesday and is also loving being on CPAP. They are doing well breathing on their own and both of them have learned the joys of pacifiers. The nurses have told us that the twins are no longer considered intensive care patients and that we should not be surprised if they are moved to another less intensive room in the Newborn Special Care Unit (NBSCU) should space become available or should their spots in the NICU be needed for other babies who are sicker. We are enjoying this change in conversation and are now entertaining thoughts of learning to bathe them, feed them, and interact more personally with them.
Hope all is well with you. We continue to thank you all for the prayers and support.
Love,
Kristen, Adam, Sarah and Johnathan
Week 6 addendum
Hi Everyone,
I know this is fast on the heels of the update this weekend, but I thought you would all appreciate being in the loop. Yesterday Johnathan was acting lethargic and not like himself. He was also frequently desaturating on his oxygen levels. His nurse was worried and ran the full septic work up. Last night around eleven we were told that he does in fact have meningitis this time. We are waiting for the cultures to grow to find out what kind of meningitis he has. They started a course of antibiotics last night and we are hoping that they started it early enough to get ahead of the menigitis.
Kris, Adam, Sarah and Johnathan
Week 7
Hello Everyone,
Life continues on in the NICU...
This week brought some sighs of relief and some well deserved laughter. In the end, after all the cultures were run and nothing grew, Johnathan was cleared of his meningitis status and the antibiotics were discontinued four days into the seven day plan. We still do not have a clear answer as to why his cerebral spinal fluid had white blood cells, nor why he was so lethargic last weekend, but he seems to have turned a corner in his health. Johnathan was moved off the CPAP and back onto the NIP-V (pressurized timed breaths) as he continued to have apnic episodes and turn a not-so-attractive squid blue. The NIP-V seems to be making a difference and we have seen him show an upward trend over the last few days in which he is not having as many apnic episodes nor oxygen desaturations. He has returned to being the bright-eyed, feisty boy that Mom and Dad know. Johnathan continues to be fed regularly, although adding to his amounts will not be a possibility until after he has his ostomies reconnected. We anticipate this next surgery to be before May. He is gaining weight at a consistent pace now.
Sarah had her own stories to share this last week. She was moved from CPAP to high humidity air which means that she is basically doing all the work breathing for herself and is simply getting some extra support with oxygen. She seems to like having a much smaller tubing on her face. On Saturday, she proved herself strong enough to attempt both breastfeeding and a bath. She took to Mom like a natural and really impressed Mom and the nurse with her ability to root and latch on. As for the bath, Sarah did very well, made some entertaining faces and cooing noises as she was bathed. Mom and Dad were able to take some great pictures of both. Sarah is now on schedule to try breastfeeding every day with Mom. Dad is a little upset that he will have less time with Sarah right now, but if it means her developing and coming home faster, he is very supportive of her medical plan.
Mom and Dad finally purchased a crib and changing table this weekend and are spending some of their limited free time getting the room ready for babies.
Happy Opening Day! GO SOX!!!!!!!!
Love,
Kris, Adam, Sarah and Johnathan
Week 8
Hello Everyone,
We have hit a certain cadence in our lives now, riding out the bumps with (we hope) some kind of fortitude and enjoying the beauty of our children in the in-between times. The staff in the NICU knows us by name and face and has made us feel both welcome and an active part of our children's growth, development and healing. The roller coaster ride continues to be adventurous, however some of the dips and curves do not frighten us as much as they once did - not to say that we are not nervous, stressed and sometimes scared for the twins - but sometimes we have learned to have a calm reaction to new news.
Johnathan has blessedly had a quiet week. His last bout of meningitis really never came to anything and the NICU staff thought in the end that he had a virus, although the viral cultures never showed any growth either. He is a whopping 4 pounds 2 ounces now and we are
(im)patiently waiting for Surgery to study his bowel to be sure he can be cleared for the surgery to reconnect his ostomies and put his intestines back in working order. We have been waiting for this for a long time. He is still off the ventilator and is currently enjoying being on CPAP. His primary nurse would like him to go to high humidity by Wednesday, and we are hopeful of seeing him do this before he is re-intubated for surgery. Johnathan, since he has begun putting on the third trimester weight, has become a little heater. He was so hot in his isolette that he became rather cranky and finally graduated to a regular NICU crib (which we affectionately refer to as the "prison crib") Saturday. He loves the freedom of being in the open air and being heard all over the room. He has quite the set of lungs when he chooses to use them! As he is now in a regular NICU crib he is wearing real baby clothes. We are surprised by how well the preemie clothes fit and how quickly he is beginning to fill them out.
Sarah is giving her nurses and the NICU staff a run for their money. She graduated to high humidity last week and was cruising along breathing. She also had her first few times nursing. These are "non-nutritive" nursing times as she is just learning to root and suckle. She is still tube-fed, but with the smaller nasal canulas that come with the high humidity, she is at least able to latch on and give a try at nursing. Mom is happy to report that Sarah took to nursing like a natural and by the end of last week was attaining some force of suction! She also knows she has a set of lungs to use and is trying them out, even if the isolette mutes her volume a little. Saturday brought Sarah a change in her status. She was pale, having frequent apnic episodes and was generally listless. Her nurse insisted on a septic workup and by midnight Sunday, Sarah was on intravenous antibiotics, back on CPAP, and off her feeds. A set of x-rays were taken to see what was going on in her gut. The x-rays showed a disorganized pattern of gas, and we were fearful that it was the same as the problem Johnathan had earlier and needed the surgery, but thankfully that has not been the case. To date, the cultures have not grown anything and additional x-rays have shown Sarah's gut to be organized again. A viral swab was taken today, to try to narrow down the illness. Today, however, Sarah was back to her feisty self. Her white cell count was back to normal and the only residual effect of whatever was ailing her was a lowered hematocrit, so she received some more packed red blood cells. Her feeds were started again this morning, much to her pleasure - the screaming and crying were too much for the nurses to take. That child LOVES her food!
Easter Sunday was a bit strange this year. Mom and Dad attended Mass, then visited Mom's family in New Britain, then went to the hospital for the afternoon. Mom and Dad had a quiet dinner together and did laundry. So many people asked if we'd be spending Easter Sunday with family, to which we answered that we would - "family" now having a new meaning in Mom and Dad's life. The exciting part of Easter Sunday was having a family photo taken with the kids. Sarah and Johnathan were in their Easter Best and were able to be together in Johnathan's crib for a few minutes while pictures were taken. Mom and Dad will cherish these photos for a long time.
Mom and Dad are still preparing for the twins' arrival at home. Mom's old car was traded in on Friday for a new Toyota Highlander Hybrid which will be more capable of handling twins and their paraphernalia than the old Chevy Prism. Mom's enjoying driving her new vehicle, and lets Dad drive it when she's not using it. Mom and Dad are also working at finding a pediatrician.
We hope you all had a good Easter.
Love,
Kristen, Adam, Sarah and Johnathan
Week 9
Hi Everyone,
The last few weeks have had a new feel to them. Mom and Dad have felt like they are in stuck in time lapse photography or film when one object stays in place and everything around it is in fast forward, sitting in the NICU with the kids and watching as everyone goes about his or her business faster than normal. The weather has finally changed for the better here in New England, and Mom and Dad are feeling like Febrary has finally come to an end.
Johnathan is gaining weight at a steady pace, topping off this morning at 5 pounds, 2 ounces. He had his high peg enema this past Thursday and everything is patent (open) and ready to go for surgery. Ana, Johnathan's primary nurse, said that he was so open that the test only took five minutes! Unfortunately, he was diagnosed with a urinary tract infection earlier this week and is not eligible for the surgery until next week at the earliest. Mom and Dad had a number of conversations with the surgeon yesterday about the timing of the surgery. Right now, it is scheduled for May 2nd. While this was a blow to both Mom and Dad, they are understanding that Johnathan will be stronger and more capable of healing after the surgery two weeks from now than he is this week. Obviously, Mom and Dad want what is best for Johnathan.
Sarah is cruising along. On Friday she was moved from the NICU to the step-down room as she has not been a true ICU patient for some time now and room is limited in the NICU. Eviction being what it is, Mom and Dad are now trying to balance seeing Sarah and Johnathan in different rooms. Sarah is slowly being weaned from her oxygen and today is down to one liter of oxygen versus the two liters she was on two days ago. The plan is to take her off high flow oxygen this weekend and put her on regular flow. She has also been taken out of her isolette and is now in a basinette. Dad said that it is like being moved from first class to coach. She was in the top of the line, cadilac version of isloettes, in the big open room, and is now in the plastic basin typical of hospital basinettes in a room with many more babies. I think Mom and Dad will take coach happily if it means that little Sarah is moving along at a steady pace. On top of her move and less oxygen, Sarah is now taking a bottle and nursing. She has two of these type feedings per shift and is loving it. She does very well on breast and bottle and her primary nurse, Catherine, is quite pleased with the attention she is giving both kinds of feeding. Sarah is 3 pounds, 15 ounces as of today.
Mom and Dad are taking advantage of the nice weather today and are trying to get some much needed yard work done. After the nor'easter last week, there are many pine cones and quite a few large branches that came down onto the yard. Jake, the dog, finds this a wonder and loves eating and chewing whatever he finds in the yard, but pine sap is not a necessary addition to the house, so the yard must be cleaned!
Hope you all are well. Happy spring and GO SOX!!!
Love,
Kristen, Adam, Sarah and Johnathan
Week 12
Hi Everyone,
The theme of the week is "Breathing". Mom and Dad are trying to learn to breathe and Sarah and Johnathan are doing their utmost to prevent this fairly natural occurrence.
Johnathan has had his usual ups and downs over the last two weeks. Since the last email letter, actually the day after the last, Johnathan was diagnosed with a UTI (urinary tract infection) and fought it off with a full round of antibiotics. Almost immediately after clearing the UTI, he had a fairly strong round of apnic episodes, dropped his temperature, and developed a collection of petechia ( small red dots caused by bleeding capillaries) on his various appendages. After a septic workup and other tests, it was confirmed that Johnathan had contracted Cytomegalovirus (CMV). The question was, where did he get it from? Some researching led to Mom's milk. It is believed that 70% of the population carries this virus, and Mom, given her work environment, tested positive with this virus. Needless to say, it was a tough week and Mom struggled with the fact that she made her little boy sick. Dad was a knight in shining armor and broke the news of the contraction source to Mom before they got to Yale so he could be more gentle in the news than even the kindest of NICU staff could be. The staff in the NICU was greatly supportive, and calmed the guilt Mom felt, at least to some degree. Sarah was also tested for CMV and her tests came back positive, however, she was and has been asymptomatic. Johnathan, given his state, was not cleared for surgery on May 2nd. He had a low white blood count, low hematocrit, and low platelets. He was transfused and seems now to be getting better (knock wood). Mom and Dad heard yesterday that the surgery for Johnathan will most likely be this coming week, either Monday or Wednesday. He has met the weight requirement for surgery and is keeping the nickname of "pork chop" as he is now 6 pounds, 6 ounces.
Sarah is cooking along. After her move to the step-down room, she seems to have really taken off. She increases her feeds on almost a daily basis and is on a weaning course for her oxygen. Right now she is on low-flow oxygen and the hope is that she comes off of it entirely so she can change her address to 3 Blue Hill Road. Tuesday of this past week, Mom and Dad were told that a number of changes were being made so that this is a possibility sometime in the next few weeks. (Thus, the theme of breathing) She also is on new milk fortifiers that can be purchased at the drug store and is on a course of increasing her feeds by mouth. Sarah weighed in last night at 4 pounds, 11 ounces.
Mom and Dad are busily trying to prepare for the twins' arrival at Blue Hill Road. Mom was given three lovely showers in the last few weeks by Grandma Smatt at her house, Nana Mucinskas at Aunt Carmen's in Grafton, and Mom's friend Sue who invited all the women members of the WHS staff for a shower yesterday in the Media Center at WHS. Everyone has been more than generous and Mom and Dad are well able to welcome Sarah and Johnathan home. The Nursery is ready, baby clothes are clean and put away, and car seats will be installed in Mom's new car this week. Mom and Dad are also meeting with a prospective pediatrician this week.
Hope you all are enjoying the beautiful weather.
Love,
Kristen, Adam, Sarah and Johnathan
Week 13
Hi Everyone,
Thank you for your continued thoughts and prayers. They were appreciated this week.
Johnathan had his surgery on Monday. Mom and Dad heard rumours of his impending surgery on Friday night and rescheduled their already rescheduled week to accomodate being present at Yale-NH for the surgery. Dad was unable to reschedule patients, so Mom waited with Johnathan most of the day on Monday until he was taken to surgery. The surgeon came around in the morning on Monday and affirmed that Johathan was ready to go. There was some concern that he would not be up to the surgery due to his ongoing fight with the CMV. The surgeons felt that with additional platlets on board, Johnathan would be able to handle the surgery. He was fiesty and alert Monday as surgery approached, but cried a bit as he was taken down to the OR as his binky would not stay put in his mouth. Johnathan came through surgery as a trooper; The surgeons were pleased with the take down of the ostomies. After the surgery, Johnathan had a fairy rough week. The nursing staff wrestled with his pain management and swelling. Luckily, Ana and Ruth (Johnathan's primary nurses) were on with him all week and helped him through the worst of the pain and swelling. To date, Johnathan is still somewhat sedated and on pain medication. He has been intubated since the surgery. Mom and Dad are really hoping that he is past the worst of it and that he will begin to improve soon.
Sarah, on the other hand, is making serious progress. She has been turned down to minimum settings on her oxygen and is being fed most of her feedings by mouth. This week she was seen by the occupational therapists and has some excercises to do to increase the mobility of her neck. She has really liked her right side, so she tends to not look to her left. The exercises she has will enable her to look both ways easily. She is more alert than Mom and Dad have seen her and she enjoys both nursing and bottle feeding (although Mom and Catherine know that Sarah like nursing better).
Mom enjoyed her first Mother's Day. She slept in, Dad made breakfast, gardened and then went to Yale to see her children.
Love,
Kristen, Adam, Sarah and Johnathan
Much like last week, this week has been quite the roller coaster. We had been told to expect this pattern for a while. I was discharged from the hospital February 12th and was still sore and tired, but was healing. Adam was stressed out and tired, but seemed to be strong.
Sarah continued to improve aside from a few instances when her heart rate and oxygen levels would drop. The doctors thought that this is happening due to possible infection. She had been given the full infection workup twice this week and new antibiotics were added to her regimen. She had her Umbilical Artery and Vein Catheter removed and a Peripheral Venous Catheter put in. She has also had a few poopie diapers in the last week which Mom and Dad were more than happy to help change. She was being fed now from Mom's supply, and has gained an ounce. Johnathan had a more difficult week than Sarah. After a good start being weaned off the ventilators and recovering from the Pulmonary Interstitial Emphysema, as well as having an Intercranial Bleed stabilizing, he was rushed to emergency surgery on Thursday around noon when he showed a perforation of the bowel. 31 centimeters (roughly 1/3 of his small intestine) was removed due to Necrotizing Enterocolitis. He had two stoma on his stomach where the large intestine and the small intestine ends could be monitored to make sure the intestine stayed pink and healthy and to make sure no more of it dies off. He is doing what the doctors expect him to be doing at this point. He was back on the oscillating ventilator for a few days following the surgery, but was removed from it and placed back on the regular ventilator this morning.
Week 2:
This week has been another roller coaster of a week. We are told to be ready for this pattern, but somehow the dips and raises in the coaster track are never expected. Sarah continued to chug along. She was up to 1 lb, 13 oz, and is on a regular feeding schedule. She tolerated the feedings well and this week was able to be held by both Mommy and Daddy. She seemed to enjoy the experience, although not as much as we did. Sarah is experiencing periods of apnea; the NICU team seems to think she is just tiring from being off the intubation and only on the CPAP (nose prongs) for oxygen. If necessary, she would be re-intubated to help her not wear herself out. Johnathan was proving to have more challenges. Being a boy, he never showed his feelings, but changed color and that was his saving grace so far - that and a very excellent primary nurse. The week started off fine for him. He was steadily improving from his surgery the previous week and was able to have a colostomy bag as he began stooling early in the week. Mommy held Johnathan on Monday, and by Tuesday the skin layer of his surgery site had opened up, leading to not being able to be held. There is no apparent infection at the wound opening, and the doctors are packing the open wound with calcium alginate. On Thursday, his color was pale and motley, so the nurse, Ana, called for a full workup. The workup showed an elevated white blood count, but the lumbar puncture was not able to be done. Friday, the attending physician was able to draw the lumbar puncture and the initial culture showed a yeast meningitis.
We will not find out the results of the full culture for a few days as the yeast needs to grow out. John was started on amphotericin immediately, and had a stable night last night. He has had a few more transfusions this week as he was slightly anemic, so his color now is pretty good. He has maintained his birth weight of 1lb, 15 oz. Daddy was able to hold Johnathan last night as the primary nurse thought it would be good for Johnathan and Daddy to have the experience. He seems to do well with holding and seems to like it as well. His cranial ultrasound was repeated Thursday, and the intraventricular bleed is holding steady at Level Two, which means relatively low long term effects. He is a tough little one and we are praying that he continues to be a fighter.
We'll keep you updated as anything new happens.Thank you for your continued prayers.
-Kristen,
Adam, Sarah and Johnathan
Week 3 update
Hi Everyone,
Once again, thank you for your continued prayers and support. You have all been amazing. We have neither wanted for food nor prayers over the last week. Thank you!
Johnathan and Sarah (knock wood) decided to give us a bit of a break this week. They are both up to 2 pounds! As you read, you will see that the theme of the week is "poop" and all things bathroom related.
After Johnathan's meningitis scare last week, the cultures never grew and there is now some question as to whether there was a meningitis or not at all. In order to ensure the fact that the meningitis does not develop, Johnathan is on a continued course of amphotericin (an antifungal) to prevent the growth of the yeast. There was some yeast present when he had the abdominal surgery two weeks ago, so they are practicing safe medicine. He has has a quiet week, other than some desaturations in his oxygen level. He continues to be on intubated and on a ventilator. This week he began stooling (who knew we'd be this excited about poop!) which means that his digestive track is beginning to function normally after the gastric surgery. Since this is the case, they have begun what they term "non-nutrative feedings" giving Johnathan 1 cc of breastmilk every four hours (or so) to get his GI track functioning normally. It takes more calories for him to process the milk than there are in the feedings thus far, so he is still on TPN (basically a high nutrient IV) to give him the nutrients and engery he needs to grow. To add a little humor, Johnathan had a bit of a rude awakening Friday night. There was some concern by the medical team that Johnathan's testes had not yet descended, so they called in Endocrinology as a consult. John was sleeping peacefully (he does this well) when the endocrinologist put his hands in the isolette, took off John's blanket and diaper and began to measure John's male parts with a rather cold ruler. Needless to say, there was much crying on John's part and a rather futile attempt at not laughing on Mom and Dad's parts. The endocrinologist thought things there looked normal, but sent blood off anyway to ensure proper hormone levels for a male preemie.
Sarah has had an equally quiet week. She is up to 12cc's breastmilk for feedings every two hours. She has been taken off of IV feedings entirely and is receiving all of her nutrition via the OG (oral-gastric) tube that leads from her mouth to her stomach. Sarah was re-intubated last Sunday night after a pattern of rather low desaturations. It is thought that she simply tired out breathing at such a young age and was taking breaks from the whole breathing experience. We are told that this is normal for preemies of their gestational age and that she will eventually mature enough to remember to breathe on her own. Sarah has her own poop story to share this week: Friday night she had not had a BM when we left around eight, when I called at 6 am to check in, the nurse on duty told me that she had had a quiet night but that "Your daughter" (yeah, OURS!) had been a bit naughty. Evidently, when the nurse checked her diaper, there was only urine. Taking a rather cavalier attitude toward diaper changing, she had no diaper under Sarah (Mistake number one) and was holding up Sarah's little bottom when, oops! Mount Vesuvius erupted! Yes, a huge BM all over her blanket and up to the nurse's elbow! The nurse told me she thought that Sarah probably weighed slightly less that morning after her evening "experience". We were just hysterical that our little daugher was fresh enough to thank the nurse in such a demonstrative manner.
Thank you for sharing in our little roller coaster. We continue to think of you all and thank you for your prayers, numerous prayer groups, and support.
Love,
Kristen, Adam, Sarah and Johnathan
Week 4
Hi Everyone,
The saga continues...
As I wade through a large list of presents for which I need to write thank you notes, and which also need to be put away to wait for the twins to come home, I am struck by the absolute adventure that our kids are putting us through. Johnathan seems not able to give Mom and Dad a break. I have suspended his driving privileges until I see fit to reinstate them. At the rate he is going, he will be grounded from the day he reaches teen-hood until his retirement date.
Week four brought more "learning to breathe" exercises for Sarah. She continues to be on the ventilator with fluctuating support. She is showing a regular pattern of desaturations in her oxygen level every two hours...right about the time that she is ready to be fed, changed, medicated, and massaged. She gained a little more weight this week and is averaging at two
pounds, three ounces. It seems that the full feeds are suiting her. She seems aware of the regular feeding times and knows when she wants attention, setting off monitors helter-skelter and giving her nurses a run for it. The medical staff is trying to wean her on the ventilator over the next few days in an attempt to bring her to extubatable settings. They seem to think that with regular feedings and more muscle mass on her, she will simply take herself off the need for the ventilator. This would be good; the long term effects of the ventilator can lead to lung disease which she would eventually outgrow, but which would be detrimental to her overall health for the first few years.
Johnathan is, well...Johnathan. After the peace of the last week, he gave Mom and Dad their weekly crisis. Wednesday, the nurse thought she heard a heart murmur. This murmur was then heard by the attending
physician and then consequently by the cardiothoracic surgeons who determined that Johnathan had a Patent Ductus Arteriosum. This is basically when the duct that bypasses the lungs while the infant is still in utero opens or fails to shut after birth, leading to a lack of oxygenated blood in the system and a harder load for the heart to carry. It seems that Johnathan had opened this ductus. Due to the surgery that he endured a few weeks back, he is not a candidate for the medicine that could be given to close the ductus, therefore, on Thursday we sat with the nurses, the attending physicians, then talked on the phone with the cardiothoracic surgeons to discuss Johnathan's surgical plan. The plan was to do surgery on Friday, the ninth. Friday morning, Dad worked, came home, picked up Mom and off we headed to Yale to visit with Johnathan before his surgery and to sign any consent forms for the surgery. When we arrived at Yale, Johnathan's
primary nurse informed us that there would be no surgery as he had closed the duct overnight on his own. We were cautiously optimistic. After his "almost" meningitis (the cultures never grew), we were convinced that Johnathan decided that the gig was up and after a fourteen day course of some rather powerful antifungals, he really did not want to go through surgery. Today, when we called the hospital for the early morning update, we were informed that the murmur had come back overnight and then disappeared again by morning. We are hoping that the duct remains closed. They are still holding his feeds until he can process them.
The dog and cat are acclimating to Mom and Dad's comings and goings, and seem to enjoy the strangely scented laundry that we are bringing home from Yale every few days. Baby blankets and micro-preemie sized clothes seem to be an interesting addition to the house, but Dog and Cat are wondering
when we can be a pack again and where these strange smells are coming from.
Love,
Kristen, Adam, Sarah and Johnathan
Week 5
Hello Everyone,> Week five in the NICU continued on the regular> path. > > Johnathan is still battling closing the PDA (open> duct near his heart) and either has a murmur or> doesn't, depending on the time of day. He is now up> to 3 pounds, 2 ounces and is being fed! He's > making regular increases on the feeds and gets them> every two hours. He seems to like them and sleeps,> well, like a baby, after he's fed. The incision> site from the NEC (intestinal surgery) from three> weeks ago is closing nicely and really looks> healthy. He is proving to be laid back and relaxed> about most everything and seems to take everything> but face-washing in stride. That he does not like> at all.> > Sarah is making regular strides in her own> feedings, but is proving to be rather a primadonna> about life in general. She will definitely let> everyone know when her diaper is wet or when feeding> time is ten minutes away by setting off her monitors> and having little tantrums. Sarah is weighing in at> a petite 2 pounds, 8 ounces. This Tuesday she gave> us a scare (and her primary nurse, Catherine) when> she cried non-stop from 8 in the morning until 2 in> the afternoon. After a battery of tests, and> finally a bath to wash off all the goop from the> tests, she calmed down and became the little doll we> know her to be. It appears at this point that she> either was just having a bad day, or Mom ate> something that did not agree with Sarah. > > Both Sarah and Johnathan continue to be on> ventilators and will begin treatment tonight for> chronic inflamation of the lungs. The hope is that> they will be able to be weaned off the ventilators> over the next week or so.> > Thanks for the continued prayers for our little> ones.> Love,> Kristen, Adam, Sarah, and Johnathan
Week 6
Hi Everyone,
The weeks continue to pass by us. Kristen went back to work this week on Wednesday. She is splitting her maternity leave in half, this prior part to heal from the delivery and the second half she will take when the twins come home. It was a tough day for her on Wednesday - very emotional - but she made it through the week and is stronger for it. Adam is continuing to work and finish projects around the house. Some of you might have heard that we had a bit of a flood in the basement during the March 2nd storm due to a frozen and backed up French Drain system and a sump pump failure, so the sump pump had to be replaced with a working model. Adam finished that project this week while Kristen was working. We finally bought a crib this weekend and a changing table/dresser for the babies. We had planned on purchasing one earlier, but with the adventure we have been on with the babies these past seven weeks, it just didn't happen. The babies primary nurses have been bugging us about getting the house ready for the babies, so we decided that since things are looking more stable, it was time.
The babies have made some significant gains this week. Johnathan is now up to 3 pounds, 1 ounce. He is still being fed through the OG tube, but is tolerating it well and seems to enjoy having a full belly. Sarah is up to 2 pounds, 9 ounces and is on full feeds. They are both having wakeful periods in which they are alert, looking around and interacting with their environments. They do well when Mom and Dad hold them and can tolerate being held for up to three hours. Last Sunday, the twins were started on a course of steroids to aid them in coming off the ventilators. On Tuesday, Sarah was taken off the ventilator and put on CPAP (air through a nasal tube). She is loving being off the ventilator and is doing a great job breathing on her own. Johnathan was taken off the ventilator on Wednesday and is also loving being on CPAP. They are doing well breathing on their own and both of them have learned the joys of pacifiers. The nurses have told us that the twins are no longer considered intensive care patients and that we should not be surprised if they are moved to another less intensive room in the Newborn Special Care Unit (NBSCU) should space become available or should their spots in the NICU be needed for other babies who are sicker. We are enjoying this change in conversation and are now entertaining thoughts of learning to bathe them, feed them, and interact more personally with them.
Hope all is well with you. We continue to thank you all for the prayers and support.
Love,
Kristen, Adam, Sarah and Johnathan
Week 6 addendum
Hi Everyone,
I know this is fast on the heels of the update this weekend, but I thought you would all appreciate being in the loop. Yesterday Johnathan was acting lethargic and not like himself. He was also frequently desaturating on his oxygen levels. His nurse was worried and ran the full septic work up. Last night around eleven we were told that he does in fact have meningitis this time. We are waiting for the cultures to grow to find out what kind of meningitis he has. They started a course of antibiotics last night and we are hoping that they started it early enough to get ahead of the menigitis.
Kris, Adam, Sarah and Johnathan
Week 7
Hello Everyone,
Life continues on in the NICU...
This week brought some sighs of relief and some well deserved laughter. In the end, after all the cultures were run and nothing grew, Johnathan was cleared of his meningitis status and the antibiotics were discontinued four days into the seven day plan. We still do not have a clear answer as to why his cerebral spinal fluid had white blood cells, nor why he was so lethargic last weekend, but he seems to have turned a corner in his health. Johnathan was moved off the CPAP and back onto the NIP-V (pressurized timed breaths) as he continued to have apnic episodes and turn a not-so-attractive squid blue. The NIP-V seems to be making a difference and we have seen him show an upward trend over the last few days in which he is not having as many apnic episodes nor oxygen desaturations. He has returned to being the bright-eyed, feisty boy that Mom and Dad know. Johnathan continues to be fed regularly, although adding to his amounts will not be a possibility until after he has his ostomies reconnected. We anticipate this next surgery to be before May. He is gaining weight at a consistent pace now.
Sarah had her own stories to share this last week. She was moved from CPAP to high humidity air which means that she is basically doing all the work breathing for herself and is simply getting some extra support with oxygen. She seems to like having a much smaller tubing on her face. On Saturday, she proved herself strong enough to attempt both breastfeeding and a bath. She took to Mom like a natural and really impressed Mom and the nurse with her ability to root and latch on. As for the bath, Sarah did very well, made some entertaining faces and cooing noises as she was bathed. Mom and Dad were able to take some great pictures of both. Sarah is now on schedule to try breastfeeding every day with Mom. Dad is a little upset that he will have less time with Sarah right now, but if it means her developing and coming home faster, he is very supportive of her medical plan.
Mom and Dad finally purchased a crib and changing table this weekend and are spending some of their limited free time getting the room ready for babies.
Happy Opening Day! GO SOX!!!!!!!!
Love,
Kris, Adam, Sarah and Johnathan
Week 8
Hello Everyone,
We have hit a certain cadence in our lives now, riding out the bumps with (we hope) some kind of fortitude and enjoying the beauty of our children in the in-between times. The staff in the NICU knows us by name and face and has made us feel both welcome and an active part of our children's growth, development and healing. The roller coaster ride continues to be adventurous, however some of the dips and curves do not frighten us as much as they once did - not to say that we are not nervous, stressed and sometimes scared for the twins - but sometimes we have learned to have a calm reaction to new news.
Johnathan has blessedly had a quiet week. His last bout of meningitis really never came to anything and the NICU staff thought in the end that he had a virus, although the viral cultures never showed any growth either. He is a whopping 4 pounds 2 ounces now and we are
(im)patiently waiting for Surgery to study his bowel to be sure he can be cleared for the surgery to reconnect his ostomies and put his intestines back in working order. We have been waiting for this for a long time. He is still off the ventilator and is currently enjoying being on CPAP. His primary nurse would like him to go to high humidity by Wednesday, and we are hopeful of seeing him do this before he is re-intubated for surgery. Johnathan, since he has begun putting on the third trimester weight, has become a little heater. He was so hot in his isolette that he became rather cranky and finally graduated to a regular NICU crib (which we affectionately refer to as the "prison crib") Saturday. He loves the freedom of being in the open air and being heard all over the room. He has quite the set of lungs when he chooses to use them! As he is now in a regular NICU crib he is wearing real baby clothes. We are surprised by how well the preemie clothes fit and how quickly he is beginning to fill them out.
Sarah is giving her nurses and the NICU staff a run for their money. She graduated to high humidity last week and was cruising along breathing. She also had her first few times nursing. These are "non-nutritive" nursing times as she is just learning to root and suckle. She is still tube-fed, but with the smaller nasal canulas that come with the high humidity, she is at least able to latch on and give a try at nursing. Mom is happy to report that Sarah took to nursing like a natural and by the end of last week was attaining some force of suction! She also knows she has a set of lungs to use and is trying them out, even if the isolette mutes her volume a little. Saturday brought Sarah a change in her status. She was pale, having frequent apnic episodes and was generally listless. Her nurse insisted on a septic workup and by midnight Sunday, Sarah was on intravenous antibiotics, back on CPAP, and off her feeds. A set of x-rays were taken to see what was going on in her gut. The x-rays showed a disorganized pattern of gas, and we were fearful that it was the same as the problem Johnathan had earlier and needed the surgery, but thankfully that has not been the case. To date, the cultures have not grown anything and additional x-rays have shown Sarah's gut to be organized again. A viral swab was taken today, to try to narrow down the illness. Today, however, Sarah was back to her feisty self. Her white cell count was back to normal and the only residual effect of whatever was ailing her was a lowered hematocrit, so she received some more packed red blood cells. Her feeds were started again this morning, much to her pleasure - the screaming and crying were too much for the nurses to take. That child LOVES her food!
Easter Sunday was a bit strange this year. Mom and Dad attended Mass, then visited Mom's family in New Britain, then went to the hospital for the afternoon. Mom and Dad had a quiet dinner together and did laundry. So many people asked if we'd be spending Easter Sunday with family, to which we answered that we would - "family" now having a new meaning in Mom and Dad's life. The exciting part of Easter Sunday was having a family photo taken with the kids. Sarah and Johnathan were in their Easter Best and were able to be together in Johnathan's crib for a few minutes while pictures were taken. Mom and Dad will cherish these photos for a long time.
Mom and Dad are still preparing for the twins' arrival at home. Mom's old car was traded in on Friday for a new Toyota Highlander Hybrid which will be more capable of handling twins and their paraphernalia than the old Chevy Prism. Mom's enjoying driving her new vehicle, and lets Dad drive it when she's not using it. Mom and Dad are also working at finding a pediatrician.
We hope you all had a good Easter.
Love,
Kristen, Adam, Sarah and Johnathan
Week 9
Hi Everyone,
The last few weeks have had a new feel to them. Mom and Dad have felt like they are in stuck in time lapse photography or film when one object stays in place and everything around it is in fast forward, sitting in the NICU with the kids and watching as everyone goes about his or her business faster than normal. The weather has finally changed for the better here in New England, and Mom and Dad are feeling like Febrary has finally come to an end.
Johnathan is gaining weight at a steady pace, topping off this morning at 5 pounds, 2 ounces. He had his high peg enema this past Thursday and everything is patent (open) and ready to go for surgery. Ana, Johnathan's primary nurse, said that he was so open that the test only took five minutes! Unfortunately, he was diagnosed with a urinary tract infection earlier this week and is not eligible for the surgery until next week at the earliest. Mom and Dad had a number of conversations with the surgeon yesterday about the timing of the surgery. Right now, it is scheduled for May 2nd. While this was a blow to both Mom and Dad, they are understanding that Johnathan will be stronger and more capable of healing after the surgery two weeks from now than he is this week. Obviously, Mom and Dad want what is best for Johnathan.
Sarah is cruising along. On Friday she was moved from the NICU to the step-down room as she has not been a true ICU patient for some time now and room is limited in the NICU. Eviction being what it is, Mom and Dad are now trying to balance seeing Sarah and Johnathan in different rooms. Sarah is slowly being weaned from her oxygen and today is down to one liter of oxygen versus the two liters she was on two days ago. The plan is to take her off high flow oxygen this weekend and put her on regular flow. She has also been taken out of her isolette and is now in a basinette. Dad said that it is like being moved from first class to coach. She was in the top of the line, cadilac version of isloettes, in the big open room, and is now in the plastic basin typical of hospital basinettes in a room with many more babies. I think Mom and Dad will take coach happily if it means that little Sarah is moving along at a steady pace. On top of her move and less oxygen, Sarah is now taking a bottle and nursing. She has two of these type feedings per shift and is loving it. She does very well on breast and bottle and her primary nurse, Catherine, is quite pleased with the attention she is giving both kinds of feeding. Sarah is 3 pounds, 15 ounces as of today.
Mom and Dad are taking advantage of the nice weather today and are trying to get some much needed yard work done. After the nor'easter last week, there are many pine cones and quite a few large branches that came down onto the yard. Jake, the dog, finds this a wonder and loves eating and chewing whatever he finds in the yard, but pine sap is not a necessary addition to the house, so the yard must be cleaned!
Hope you all are well. Happy spring and GO SOX!!!
Love,
Kristen, Adam, Sarah and Johnathan
Week 12
Hi Everyone,
The theme of the week is "Breathing". Mom and Dad are trying to learn to breathe and Sarah and Johnathan are doing their utmost to prevent this fairly natural occurrence.
Johnathan has had his usual ups and downs over the last two weeks. Since the last email letter, actually the day after the last, Johnathan was diagnosed with a UTI (urinary tract infection) and fought it off with a full round of antibiotics. Almost immediately after clearing the UTI, he had a fairly strong round of apnic episodes, dropped his temperature, and developed a collection of petechia ( small red dots caused by bleeding capillaries) on his various appendages. After a septic workup and other tests, it was confirmed that Johnathan had contracted Cytomegalovirus (CMV). The question was, where did he get it from? Some researching led to Mom's milk. It is believed that 70% of the population carries this virus, and Mom, given her work environment, tested positive with this virus. Needless to say, it was a tough week and Mom struggled with the fact that she made her little boy sick. Dad was a knight in shining armor and broke the news of the contraction source to Mom before they got to Yale so he could be more gentle in the news than even the kindest of NICU staff could be. The staff in the NICU was greatly supportive, and calmed the guilt Mom felt, at least to some degree. Sarah was also tested for CMV and her tests came back positive, however, she was and has been asymptomatic. Johnathan, given his state, was not cleared for surgery on May 2nd. He had a low white blood count, low hematocrit, and low platelets. He was transfused and seems now to be getting better (knock wood). Mom and Dad heard yesterday that the surgery for Johnathan will most likely be this coming week, either Monday or Wednesday. He has met the weight requirement for surgery and is keeping the nickname of "pork chop" as he is now 6 pounds, 6 ounces.
Sarah is cooking along. After her move to the step-down room, she seems to have really taken off. She increases her feeds on almost a daily basis and is on a weaning course for her oxygen. Right now she is on low-flow oxygen and the hope is that she comes off of it entirely so she can change her address to 3 Blue Hill Road. Tuesday of this past week, Mom and Dad were told that a number of changes were being made so that this is a possibility sometime in the next few weeks. (Thus, the theme of breathing) She also is on new milk fortifiers that can be purchased at the drug store and is on a course of increasing her feeds by mouth. Sarah weighed in last night at 4 pounds, 11 ounces.
Mom and Dad are busily trying to prepare for the twins' arrival at Blue Hill Road. Mom was given three lovely showers in the last few weeks by Grandma Smatt at her house, Nana Mucinskas at Aunt Carmen's in Grafton, and Mom's friend Sue who invited all the women members of the WHS staff for a shower yesterday in the Media Center at WHS. Everyone has been more than generous and Mom and Dad are well able to welcome Sarah and Johnathan home. The Nursery is ready, baby clothes are clean and put away, and car seats will be installed in Mom's new car this week. Mom and Dad are also meeting with a prospective pediatrician this week.
Hope you all are enjoying the beautiful weather.
Love,
Kristen, Adam, Sarah and Johnathan
Week 13
Hi Everyone,
Thank you for your continued thoughts and prayers. They were appreciated this week.
Johnathan had his surgery on Monday. Mom and Dad heard rumours of his impending surgery on Friday night and rescheduled their already rescheduled week to accomodate being present at Yale-NH for the surgery. Dad was unable to reschedule patients, so Mom waited with Johnathan most of the day on Monday until he was taken to surgery. The surgeon came around in the morning on Monday and affirmed that Johathan was ready to go. There was some concern that he would not be up to the surgery due to his ongoing fight with the CMV. The surgeons felt that with additional platlets on board, Johnathan would be able to handle the surgery. He was fiesty and alert Monday as surgery approached, but cried a bit as he was taken down to the OR as his binky would not stay put in his mouth. Johnathan came through surgery as a trooper; The surgeons were pleased with the take down of the ostomies. After the surgery, Johnathan had a fairy rough week. The nursing staff wrestled with his pain management and swelling. Luckily, Ana and Ruth (Johnathan's primary nurses) were on with him all week and helped him through the worst of the pain and swelling. To date, Johnathan is still somewhat sedated and on pain medication. He has been intubated since the surgery. Mom and Dad are really hoping that he is past the worst of it and that he will begin to improve soon.
Sarah, on the other hand, is making serious progress. She has been turned down to minimum settings on her oxygen and is being fed most of her feedings by mouth. This week she was seen by the occupational therapists and has some excercises to do to increase the mobility of her neck. She has really liked her right side, so she tends to not look to her left. The exercises she has will enable her to look both ways easily. She is more alert than Mom and Dad have seen her and she enjoys both nursing and bottle feeding (although Mom and Catherine know that Sarah like nursing better).
Mom enjoyed her first Mother's Day. She slept in, Dad made breakfast, gardened and then went to Yale to see her children.
Love,
Kristen, Adam, Sarah and Johnathan
Thursday, February 5, 2009
Our Story
“Congratulations, Kristen, you’re pregnant!” The words my husband and I had been waiting to hear for over two years finally were said. We’d tried on our own for a year, then, on my OBGYN’s recommendation, we visited a specialist to find out why my husband and I had had no luck in conceiving. Had we known what we would be in for over the next year and a half, some of the elation of being pregnant would have been taken away. After two years of unexplained infertility and subsequent testing and treatments, we underwent In Vitro Fertilization. In August of 2006, we became pregnant. Holding only a 23% chance that the two fertilized eggs would take, we held our breaths as we waited out the 11 days after transfer when I would undergo a blood test to test for hCG, human chorionic gonadotropin, the growth hormone that elevates when one becomes pregnant. When the test came back positive, we were elated. As subsequent tests showed my hCG levels rising at twice the normal rate, we began to wonder if both eggs had implanted. Six weeks into the pregnancy, I began to bleed. We rushed to UCONN for an early ultrasound and were amazed, relieved, and shocked to find that there was not one, but were two embryos alive and beating within me. I was placed on bed rest and followed doctors’ orders to the letter. Things settled down after two weeks and many injections of progesterone, a hormone I would be on for two months to try and maintain the pregnancy until my body began to produce enough of its own. I passed the next five months in an excited and nervous state; how would we handle not one, but two infants? We daydreamed about the twins and were equally as surprised when we found out at the 22 week ultrasound that I was carrying a boy and a girl. We thought things couldn’t be better and began planning in earnest for the arrival of the twins. Our mothers planned showers, and we registered for our wish list of baby items.
Just a mere two weeks later, I began to experience what I thought were Braxton-Hicks contractions, the “practice” contractions for actual labor. As an expectant mother of twins I was led to believe that I would experience pregnancy symptoms ahead of singleton moms and thought nothing of the premature contractions until February 2nd when the contractions became insistent and frequent. I left work, called the doctor, and was told to rest, drink lots of water, and call if anything changed. Hours later, my husband rushed me to the emergency room when I began bleeding and the contractions became regular. My OB-GYN met us at the emergency room, did an immediate cervical check and told us that I was two centimeters dilated and one of the twin’s amniotic sacs was protruding through my cervix. I was then placed on intravenous tolcolitics, a medicine that would attempt to calm the contractions, and rushed by ambulance to Yale-New Haven Hospital. As far as we were concerned these babies would not be born at 24 weeks! We were terrified of losing the babies. For a week, the staff and doctors of Yale-New Haven Hospital worked to keep me pregnant. The twins ‘heart rates remained steady and I settled in at Yale for the long haul – a mandatory eleven more weeks of bed rest in the trendelenburg position - a position where I was on my back and my feet were raised slightly higher than my head. A week after admission, I was awakened by the nurse on duty. They were sending me to labor and delivery, frighteningly enough, I was not feeling the contractions other than a persistent back ache which, I thought, was from my positioning. Panic set in when the doctor on call told me to call my husband, the babies would not wait. He made it with minutes to spare. At twenty five weeks gestation, Sarah was born blue and unresponsive at one pound eleven ounces, and Johnathan was born crying and pink at one pound fifteen ounces. We were surprised that he was able to make a sound! The twins are taken immediately to the NICU without being held by anyone but the doctors and without being seen by anybody but my husband and the doctors. I feel empty and scared. What followed were beautiful, terrifying weeks and months of care under the incredible staff of the Yale-New Haven Newborn Special Care Unit.
We are told that the babies need to survive the next twenty-four hours. Within hours, Sarah declines, she shows signs of infection. How could this be? She was inside me for the last 25 weeks. Johnathan holds steady. Over the next week, things changed again. Sarah began the slow and steady progress that would take her home with us fifteen weeks later, and Johnathan began to study the list of preemie problems possible. Four days after their emergency delivery, Johnathan’s angel of a nurse saw something she did not like and called for tests. He had necrotizing enterocolitis (NEC), an inflammation of the large and small intestine, and was rushed to surgery immediately upon our phone agreement. Five days after this emergency colostomy, Johnathan’s nurse asked if I wanted to hold him, (of course!!!) and we began the practice of “kangarooing” the twins. Both Sarah’s primary nurse and Johnathan’s primary nurse were huge advocates of this skin-to-skin holding of preemies. I held Sarah for the first time the next day while Adam held Johnathan. This was to be some of the best time we had in the NICU. We could be a family in some small part, hold the twins, love them gently, and watch as they responded to feedings and learned to breath on their own. Johnathan passed the next weeks fighting infection after infection. While Sarah slowly and steadily improved, feeding through an NG tube in small and increasing increments, and still using a ventilator, Johnathan fought for life and breath through a multitude of preemie complications - intracranial bleeds, pulmonary interstitial emphysema, meningitis, a patent ductus, fungal infections, urinary tract infections, and later retinopathy of prematurity due to the constant use of oxygen on tender lungs. Sarah slowly improved, she passed through weeks of apnea (forgetting to breathe due to an immature nervous system), and gradually was weaned with the help of corticosteroids from the ventilators onto CPAP, Nip-V, then low- flow oxygen. She had a few infections, a bout with what would be determined as cytomegalovirus (a virus that affects 40-80% of the population), but her biggest fight was weight. She gained at an amazingly slow rate, steady, but slow. Johnathan gained weight like a prizefighter. When things would get stressful, we would go to the NICU, kangaroo the twins, and stress would literally melt off of us. They were good times when we could kangaroo at the same time. At one point Sarah and Johnathan’s isolettes were right next to one another and we could hold and visit with the twins as a family. As the twins’ due date of May 23rd approached, we began to plan long term for the twins. It was looking like Sarah would be coming home soon, and after months of living with a colostomy bag, Johnathan would have his intestine reconnected. He came through the surgery well, swelled as expected, but soon after had a number of infections. In retrospect, we can see that this was to be a slow and steady decline for our little man. He was unable to come off the ventilator due to the lung damage from being on the ventilator for so long, and we agreed to a tracheotomy so that he would be able to develop the facial muscles he would need to eventually eat and speak. More infections. While we celebrated Sarah’s homecoming on May 23rd, the actual due date, we worried for Johnathan. Sarah came home on low-flow oxygen, a number of medications, and very specific instructions for a little five pounder. She was a blessing. We marveled every day at how wonderful it was to finally have one home. I stayed home on family leave, and Adam continued working. We split visits to the NICU; I would visit during daylight hours when Adam came home from work, and he would go down after I came home from Yale. Occasionally we could go together, one of us would sit in the solarium or family waiting room with Sarah and her tank of oxygen, while the other would visit Johnathan, or one of our parents would watch Sarah at home while we went together to Yale. Sometimes, even the nurses and interns would watch Sarah in the waiting room so we could visit together.
We passed two months like this. On July 22nd, we received a call in the evening that would be scarred in our memories forever. Johnathan was failing and failing fast. Symptoms of another infection had been found and he was requiring more and more oxygen. His kidneys were failing and his heart rate was low. As it was around nine in the evening we rushed - with Sarah - to Yale. The nurses, interns, and physicians assistants took care of her while we went to Johnathan’s bedside. Over the next two days, we would spend every waking hour in the NICU, be forced to go home to rest, shower, eat, something…by Sarah’s primary nurse and Johnathan’s. We would return hours later, sleepless and worried. The evening of the 25th proved to be the worst. We had come home for a nap and dinner break, and were barely home an hour when Johnathan’s night primary nurse called to tell us to come quick, she did not know how long he would make it. We made the 35 minute drive to Yale in 20 minutes. His oxygen saturation had been steadily declining since we left him and they had taken him from ventilator to oscillating ventilator, and his intravenous port had failed. At this point we were given a choice, take him off the ventilator and hold him until he passed, or continue to struggle with the task of oxygenating him and trying to force medications into his swollen and struggling body. We opted to hold him. If I never make another decision in my entire life, this will have been the toughest. We opted to hold our son while he died. NO parent should ever have to go through this. Johnathan passed peacefully within minutes of being removed from the ventilator. We had been part of the NICU so long that the staff was family. They were wonderful. They cried with us, allowed us to give him our first bath, and wrapped him up. We went home and collapsed. Sarah had been home with our parents that last night while we were with Johnathan at Yale. The next morning dawned early and to the sounds of Sarah crying to be fed. She was alive, hungry, and a blessing we had not expected.
Over the next weeks and months, we became used to just having Sarah around. There was a hole in our lives where Johnathan had been, and is still with us in spirit, but we got used to having just one baby at home. As the months passed we focused on our little miracle at home, watching her and helping her to respond to the world around her, rejoicing in small triumphs like rolling over and laughing, and eventually enjoying the growth in muscle development that would lead her to walk, talk, sing, dance, and just be a normal toddler. Today, Sarah continues to improve. She will be two on February 9th. She graduated from the need for oxygen last March, she is no longer on any medication, her eyes have improved and she no longer shows signs of retinopathy of prematurity. She no longer needs physical therapy, but does receive some speech therapy through Birth-to-Three Servicing. She is an average two year old. Our miracle one pound eleven ounce preemie is an average two year old!
Just a mere two weeks later, I began to experience what I thought were Braxton-Hicks contractions, the “practice” contractions for actual labor. As an expectant mother of twins I was led to believe that I would experience pregnancy symptoms ahead of singleton moms and thought nothing of the premature contractions until February 2nd when the contractions became insistent and frequent. I left work, called the doctor, and was told to rest, drink lots of water, and call if anything changed. Hours later, my husband rushed me to the emergency room when I began bleeding and the contractions became regular. My OB-GYN met us at the emergency room, did an immediate cervical check and told us that I was two centimeters dilated and one of the twin’s amniotic sacs was protruding through my cervix. I was then placed on intravenous tolcolitics, a medicine that would attempt to calm the contractions, and rushed by ambulance to Yale-New Haven Hospital. As far as we were concerned these babies would not be born at 24 weeks! We were terrified of losing the babies. For a week, the staff and doctors of Yale-New Haven Hospital worked to keep me pregnant. The twins ‘heart rates remained steady and I settled in at Yale for the long haul – a mandatory eleven more weeks of bed rest in the trendelenburg position - a position where I was on my back and my feet were raised slightly higher than my head. A week after admission, I was awakened by the nurse on duty. They were sending me to labor and delivery, frighteningly enough, I was not feeling the contractions other than a persistent back ache which, I thought, was from my positioning. Panic set in when the doctor on call told me to call my husband, the babies would not wait. He made it with minutes to spare. At twenty five weeks gestation, Sarah was born blue and unresponsive at one pound eleven ounces, and Johnathan was born crying and pink at one pound fifteen ounces. We were surprised that he was able to make a sound! The twins are taken immediately to the NICU without being held by anyone but the doctors and without being seen by anybody but my husband and the doctors. I feel empty and scared. What followed were beautiful, terrifying weeks and months of care under the incredible staff of the Yale-New Haven Newborn Special Care Unit.
We are told that the babies need to survive the next twenty-four hours. Within hours, Sarah declines, she shows signs of infection. How could this be? She was inside me for the last 25 weeks. Johnathan holds steady. Over the next week, things changed again. Sarah began the slow and steady progress that would take her home with us fifteen weeks later, and Johnathan began to study the list of preemie problems possible. Four days after their emergency delivery, Johnathan’s angel of a nurse saw something she did not like and called for tests. He had necrotizing enterocolitis (NEC), an inflammation of the large and small intestine, and was rushed to surgery immediately upon our phone agreement. Five days after this emergency colostomy, Johnathan’s nurse asked if I wanted to hold him, (of course!!!) and we began the practice of “kangarooing” the twins. Both Sarah’s primary nurse and Johnathan’s primary nurse were huge advocates of this skin-to-skin holding of preemies. I held Sarah for the first time the next day while Adam held Johnathan. This was to be some of the best time we had in the NICU. We could be a family in some small part, hold the twins, love them gently, and watch as they responded to feedings and learned to breath on their own. Johnathan passed the next weeks fighting infection after infection. While Sarah slowly and steadily improved, feeding through an NG tube in small and increasing increments, and still using a ventilator, Johnathan fought for life and breath through a multitude of preemie complications - intracranial bleeds, pulmonary interstitial emphysema, meningitis, a patent ductus, fungal infections, urinary tract infections, and later retinopathy of prematurity due to the constant use of oxygen on tender lungs. Sarah slowly improved, she passed through weeks of apnea (forgetting to breathe due to an immature nervous system), and gradually was weaned with the help of corticosteroids from the ventilators onto CPAP, Nip-V, then low- flow oxygen. She had a few infections, a bout with what would be determined as cytomegalovirus (a virus that affects 40-80% of the population), but her biggest fight was weight. She gained at an amazingly slow rate, steady, but slow. Johnathan gained weight like a prizefighter. When things would get stressful, we would go to the NICU, kangaroo the twins, and stress would literally melt off of us. They were good times when we could kangaroo at the same time. At one point Sarah and Johnathan’s isolettes were right next to one another and we could hold and visit with the twins as a family. As the twins’ due date of May 23rd approached, we began to plan long term for the twins. It was looking like Sarah would be coming home soon, and after months of living with a colostomy bag, Johnathan would have his intestine reconnected. He came through the surgery well, swelled as expected, but soon after had a number of infections. In retrospect, we can see that this was to be a slow and steady decline for our little man. He was unable to come off the ventilator due to the lung damage from being on the ventilator for so long, and we agreed to a tracheotomy so that he would be able to develop the facial muscles he would need to eventually eat and speak. More infections. While we celebrated Sarah’s homecoming on May 23rd, the actual due date, we worried for Johnathan. Sarah came home on low-flow oxygen, a number of medications, and very specific instructions for a little five pounder. She was a blessing. We marveled every day at how wonderful it was to finally have one home. I stayed home on family leave, and Adam continued working. We split visits to the NICU; I would visit during daylight hours when Adam came home from work, and he would go down after I came home from Yale. Occasionally we could go together, one of us would sit in the solarium or family waiting room with Sarah and her tank of oxygen, while the other would visit Johnathan, or one of our parents would watch Sarah at home while we went together to Yale. Sometimes, even the nurses and interns would watch Sarah in the waiting room so we could visit together.
We passed two months like this. On July 22nd, we received a call in the evening that would be scarred in our memories forever. Johnathan was failing and failing fast. Symptoms of another infection had been found and he was requiring more and more oxygen. His kidneys were failing and his heart rate was low. As it was around nine in the evening we rushed - with Sarah - to Yale. The nurses, interns, and physicians assistants took care of her while we went to Johnathan’s bedside. Over the next two days, we would spend every waking hour in the NICU, be forced to go home to rest, shower, eat, something…by Sarah’s primary nurse and Johnathan’s. We would return hours later, sleepless and worried. The evening of the 25th proved to be the worst. We had come home for a nap and dinner break, and were barely home an hour when Johnathan’s night primary nurse called to tell us to come quick, she did not know how long he would make it. We made the 35 minute drive to Yale in 20 minutes. His oxygen saturation had been steadily declining since we left him and they had taken him from ventilator to oscillating ventilator, and his intravenous port had failed. At this point we were given a choice, take him off the ventilator and hold him until he passed, or continue to struggle with the task of oxygenating him and trying to force medications into his swollen and struggling body. We opted to hold him. If I never make another decision in my entire life, this will have been the toughest. We opted to hold our son while he died. NO parent should ever have to go through this. Johnathan passed peacefully within minutes of being removed from the ventilator. We had been part of the NICU so long that the staff was family. They were wonderful. They cried with us, allowed us to give him our first bath, and wrapped him up. We went home and collapsed. Sarah had been home with our parents that last night while we were with Johnathan at Yale. The next morning dawned early and to the sounds of Sarah crying to be fed. She was alive, hungry, and a blessing we had not expected.
Over the next weeks and months, we became used to just having Sarah around. There was a hole in our lives where Johnathan had been, and is still with us in spirit, but we got used to having just one baby at home. As the months passed we focused on our little miracle at home, watching her and helping her to respond to the world around her, rejoicing in small triumphs like rolling over and laughing, and eventually enjoying the growth in muscle development that would lead her to walk, talk, sing, dance, and just be a normal toddler. Today, Sarah continues to improve. She will be two on February 9th. She graduated from the need for oxygen last March, she is no longer on any medication, her eyes have improved and she no longer shows signs of retinopathy of prematurity. She no longer needs physical therapy, but does receive some speech therapy through Birth-to-Three Servicing. She is an average two year old. Our miracle one pound eleven ounce preemie is an average two year old!
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